If you coach a little league team, parent an active athlete or are an avid sportsperson yourself, it is important to know what health risks may be present during athletic events other than shin splints and bruised egos.

Close physical contact and a heightened chance of bleeding present a chance for disease transmission unless appropriate precautions are taken.

Athletes, trainers, coaches, parents, and teachers alike must know how to prevent the transmission of bloodborne viruses such as HIV and hepatitis B or C, or even skin-to-skin infections.

These infectious diseases, and others, pose complex problems for athletes of all ages and everyone involved in sports activities. But following standard precautions to prevent bloodborne, skin-to-skin, and respiratory infections simplifies and safeguards sports events and ensures that everyone can participate safely.

Sports and Standard Precautions

Universal use of standard precautions is critical because many children, adolescents, and adults who are infected with viruses, such as HIV and hepatitis B or C, may not even know they have these viruses. Estimates vary, but some predict that more than half of those infected with these viruses do not know they’re infected.

Standard precautions protect everyone, from those whose diseases have been identified, to those that have not yet been diagnosed, to those not infected. When everyone follows standard precautions, no one who has an infection needs to be treated differently. Essentially, standard precautions are the great equalizer; when followed, they allow everyone to fully and safely participate in sporting events.

The more serious bloodborne viruses that athletes need to be aware of are: HIV (the virus that causes AIDS), hepatitis B, and hepatitis C. There is no recommendation that people infected with these viruses not be allowed to participate in most sports.

Although HIV and hepatitis C are not vaccine-preventable, there is a safe and effective vaccine that prevents hepatitis B infection.

Skin-to-Skin Infections

According to the NCAA Injury Surveillance System, “skin infections accounted for almost one-third of the practice time loss events” in wrestling during the 2001-2002 season. As a result, the NCAA recommends that coaches, teachers and other sports officials be able to identify symptoms of skin infections. Symptoms may include:

In some cases, such as fungal infections, the skin conditions can be covered with a securely attached bandage or non-permeable patch to allow participation in the sporting event.

In addition to identification and treatment of individuals with skin infections, prevention can occur through proper routine cleaning of all equipment, including mats and shared common areas, such as locker rooms.

Respiratory Illnesses

Anyone with an infectious respiratory illness, such as flu, or whooping cough, or perhaps tuberculosis, should be prohibited from playing to prevent the spread of infections that are transmitted through respiratory routes.

Check back over the next couple of weeks for Parts 2 and 3 in this sports series. Part 2 gets into specifics on bloodborne pathogens, and Part 3 provides guidelines for sports teams to follow before, during, and after each event.

While soccer, softball and gymnastics are a joyful rite of passage for many young children, athletic events carry a risk for all children, given the increased chance for mishaps, accidents and blood spills.

For parents of children with viral infectious diseases, including hepatitis B, hepatitis C and HIV/AIDS, these games often present a number of stressful issues.

What if my child is hurt and another child is exposed to his or her blood?

Should I tell the coach about my child’s infectious disease if it will spur him or her to practice standard (universal) precautions?

What if the coach or athletic director doesn’t know or practice standard precautions?

Should I attend every game in case there is an accident?

Should my child even be playing this sport?

The American Academy of Pediatrics tackled this difficult issue in December, 1999, with a policy statement on HIV and Other BloodBorne Viral Pathogens in the Athletic Setting. (This policy was reaffirmed in 2008.) In it, the Academy made clear, “Because of the low probability of transmission of their infection to other athletes, athletes infected with HIV, hepatitis B or hepatitis C should be allowed to participate in all sports.”

That participation, however, assumes all athletes and coaches will follow standard precautions to prevent and minimize exposure to bloodborne viruses.

The Academy tackled each infectious disease individually.

HIV/AIDS: The risk of HIV infection through skin or mucous membrane exposure to infected blood or other infectious bodily fluids during sports events is very low. The Academy found the risk from damaged skin or mucous membrane exposure was one in 1,007 exposures or 0.1 percent.

Hepatitis B: While hepatitis B is more easily transmitted through exposure to infected blood than HIV, the Academy found only two documented sports transmission. A high school sumo wrestler with chronic hepatitis B was found to have transmitted the infection to a team member. Wrestling is the only sport that raised concern because herpes, impetigo and measles have been transmitted through skin-to-skin contact. However, there is no risk of bloodborne pathogens being contracted through wrestling, the Academy found.

An outbreak of hepatitis B occurred within an outdoor orienteering team in Sweden. Doctors believe the team members used a common cup of warm water to clean wounds caused by branches and thorns.

Hepatitis C: The risk of transmission is greater than for HIV but less than with hepatitis B. The Academy reported no documented cases of transmission in sports.

“There is clearly no basis for excluding any student from sports if they are infected,” said Dr. Steven J. Anderson, who was chair of the Academy’s Committee on Sports Medicine and Fitness when it drafted the Academy’s policy, “and we should also try to protect the confidentiality of each athlete.”

Dr. Anderson, a pediatrics professor at the University of Washington and a team doctor for many high school athletic teams, ballet companies and the U.S. Olympic Diving Team, suggests children should have access to any sport, except boxing, which the Academy opposes for all youths because of its physical risks.

Pediatricians can avoid reporting a student’s infection, the Academy noted, by making it clear on any participation forms that they support the Academy’s position that all students can participate in all sports and that pediatricians must respect an athlete’s right to confidentiality.

“I personally feel parents have no obligation to disclose the infectious status of their children to anyone,” said Dr. Anderson, “that includes their own physicians! While that may seem wrong, it is felt that if standard precautions are used for blood contact or contamination, the risk of contagion is adequately reduced.”

But strict compliance with standard precautions is critical for this open-embrace of all athletes, regardless of their infectious status. “As a parent, I would make sure that there is a plan in place to handle blood spills,” said Dr. Anderson, “including latex gloves, occlusive dressings, appropriate sterilizing solutions, disposal bags and event a printed protocol for coaches, athletes and officials.

“If standard precautions are not followed, I would recommend that the coaches or instructors are queried as to their familiarity with the precautions,” he added. “If they are not familiar with or following procedures, a higher up source needs to be consulted, such as a league office or school administrator.”

Parents should also contact the school or athletic league’s physician so he or she can also act as an advocate to ensure the coaches comply with the department or organization’s safety procedures.

But the Academy’s policy may not lessen the stress some parents feel when their very young children approach a soccer field for the first time. “When children are young, parents should educate their children about the dangers of blood contact,” said Dr. Anderson. “Despite the trauma that can accompany free play, I don’t hear of too many cases where two or more bleeding children mix their blood. I would also hope that an adult would be present when children are playing and would be consulted if there were an injury.”

Dr. Anderson feels it is not necessary to disclose a child’s infectious status to a coach. “Given the low risk of infecting other children, and the high risk of being shunned or ostracized. However, I think a responsible parent would be adamant about standard precautions being in place and followed. I supposed an astute coach might make inferences if a particular parent was a zealot about blood contamination. I would read that as a message that their child was infected and that they wanted their child to participate without creating a risk for others.”

Even when a child has an HIV infection, disclosure is not a requirement, explained Dr. Anderson, stating his personal opinion. “However, if a coach is educated about the risks, the necessary precautions and can be trusted to maintain confidentiality, disclosure may be appropriate. Unfortunately, most youth sports coaches are parent volunteers, non-professionals and are unlikely to have a long-term relationship with the athlete. In such cases, I recommend that standard precautions be followed.”

Dr. Anderson contends active contact sports, such as football, are also not off limits to athletes with infectious viral hepatitis. “However, students with infectious hepatitis A (spread through close physical contact with contaminated food, water or skin) or with liver or spleen enlargement should be restricted from contact or collision sports until the liver or spleen has returned to normal size,” he added, “and the person is no longer contagious.”

One mother whose son has hepatitis B commented, “I used to worry about my son infecting other children, but eventually I decided to make sports decisions based on what my kids risked catching from others.”

If hearing your child is infected with HIV or hepatitis B or C is the worst that can happen to a parent, telling your child about the infection runs a close second.

When should a parent disclose? How should they tell them? What will a child ask? Will they ever forgive the parents who infected them? Are silence and secrecy justified to protect a child from a painful diagnosis?

Two pioneers who have peered into the disclosure cauldron are Lori W. Wiener, coordinator of the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health, and Heidi Haiken, coordinator of Social Work at the Francois Xavier Bagnoud Center in Newark, N.J., an innovative program that works with parents and children with HIV.

For more than 10 years, Haiken and Wiener have worked with hundreds of families infected with and affected by HIV on the emotional and social issues related to the disease. Wiener, who has a PhD, has researched and written about the impact of disclosure on family members.

Their combined experiences have produced two cardinal rules for parents of children infected with chronic, viral infectious diseases:

Never lie. You don’t have to name the disease if children are very young, but never, never lie. The damage to the parent-child relationship will surpass any short-lived benefits gained by deceit.

Disclose as early as you can, especially once kids start asking questions. The longer you wait, the harder it gets and the greater your chance of undermining your child’s trust in you.

“We even tell parents who come to the center that if they don’t tell the kids by the time they reach sexual maturity, we will,” Haiken said. “But of course it’s much, much healthier to have this information come from the parents.”

Both women acknowledge that disclosing is very traumatic for parents. “For some parents, it’s just devastating,” said Haiken. “They feel guilt because they infected the child because of their past sexual behavior or drug use. They feel guilt that the child has to suffer. Even for parents of children who contracted it from transfusions or are adopted, disclosure is extremely difficult.”

Wiener, who has written several research papers on this topic, found the longer parents withheld the diagnosis, the more embedded the lies became and the harder it became to disclose the truth. “Parents often fear that once they disclose new and different information, that their child will no longer trust them,” she said. “Following disclosure, many of these children feel embarrassed that other people in their family have been aware of the diagnosis before they had been informed. Once disclosure takes place, these issues and feelings can be successfully dealt with in individual and group counseling sessions with parents and children.”

Haiken and other social workers at the center work hard to help parents work through their guilt, or at least face it without flinching, before they disclose.

“I tell them you didn’t mean for this to happen, it’s clear you never wanted to hurt your child, look at all the wonderful things you’ve done for your child,” said Haiken. “After a while they get there, they see it, but it’s still very difficult. No parent ever wants to infect her child. It’s something they felt they had no control over.”

In terms of disclosure, parents who are themselves living with HIV have additional challenges to face. They fear disclosing their own life-threatening disease to their children. But generally, says Wiener, by the time children reach ages 6 to 10, they realize the consequence and finality of death. It is useless to shield children this age from the knowledge that their parents have a serious or terminal illness.

The disclosure process, timetable and style are often dictated by the parents’ health. Can they focus on their kids and execute disclosure, or are their own health problems overwhelming? Are they getting the support and time they need or are their own medications, insurance forms and other factors too overwhelming?

“Foster or adoptive parents have the luxury of not having to worry about their own illnesses, so the emotional and financial stress on the entire family may not be as intense,” noted Haiken.

The journey to disclosure begins early, says Wiener. “The child and parent should first have a sense of trust—that is the highest priority.” Disclosure occurs little by little in age-appropriate ways as soon as a child can communicate. Just like talking about adoption, it’s always on the table, though not all the details or medical terms may be exposed just yet.

Ideally, when the parent discloses the conversation should go something like this, suggests Wiener.

“Do you remember when I told you that you had a germ in your blood? That’s why we have blood work done every year. (And) Do you remember I told you that you got the germ from blood? Well, that germ is a virus that is called HIV or hepatitis….”

“You see, the disclosure dialogue is a constant building process,” she said. “If the child asks why the parent didn’t tell them earlier, the parent needs to be able to say, ‘I never lied to you, I told you what was wrong, I just hadn’t told you name of the virus.”

It may take a child weeks, months or years to absorb the diagnosis. “Try to be where the child is at when they ask questions,” wrote Wiener. “Let the child know that no matter how difficult the subject matter, he or she can always ask questions or share feelings. Be careful, however, not to provide more information than the child wants or is prepared for. They may not be ready for a virology discussion.

“You never want to be in the position of telling a 12 year-old about his or her disease that you have never even referred to before,” she added. “That is my main concern in the disclosure process. We’ve interviewed a lot of children who have been disclosed to. Most felt they had been told at the right age and by the right person except those whose parents had a doctor tell them. Those were the only kids who remained upset about the disclosure process.”

At NIH, counselors work intensely with parents of HIV-infected children to prepare them for the disclosure discussion. Social workers even have parents write out what they will tell their children and then play the part of the child in role-play situations. Generally, parents should be prepared to answer the following questions, depending on the child’s age and development. (Some questions apply if the parent is infected also.)

Why did this happen to you?

Where did you get it from?

Are you going to die?

Am I the reason you got sick?

Who else in the family has it?

Why do I have it?

Why don’t (siblings) have it?

Am I going to die?

Will this hurt?

Who else knows I have this?

Who can I tell?

What will happen to me and (siblings)?

Can I get married?

Can I have children?

Here are some general guidelines Wiener has identified for parents to consider as they prepare for the disclosure discussion.

Where do you want to make the disclosure and who should be part of the discussion?

“You don’t want to have a ton of people there, just those whom the child trusts and feels most comfortable with,” cautioned Wiener. “Try to anticipate the child’s response based on his or her emotional age and maturity. Be careful never to disclose when you’re angry, or during an argument. Have the discussion in a safe, comfortable environment.”

What is the most important message you want your child to walk away with from this discussion?

Possibilities include: Nothing is going to change… I am just now giving you the name of the virus… We will always be there for you… I will never lie to you… Nothing you did caused this disease.

How exactly will you disclose the actual diagnosis?

“We have parents write out how they’d like it to happen, and they always start out with, ‘Do you remember?’ Weave in pertinent aspects of the child’s life and pick up the threads of your past discussions about infections,” suggested Wiener. “Rehearse the questions and answers, including ‘How did I get it? Can I get married? Can I have kids? Who else knows about it?’”

If the diagnosis is to be kept secret, who else can the child talk to?

“If parents tell a child not to tell anyone, the first thing a child will do is go tell someone,” said Wiener. “They’ll feel resentful if they have no one to talk to. Parents need to find others in the community for the child to talk to. If there isn’t anyone nearby and the child wants to tell his or her best friend, I would tell them to talk with me, the parent, first. I would explain that not everyone is as educated as we are, and it’s important that we make a plan and educate the friend about this infection first. After all, we don’t want anyone to treat us badly.”

Give child a journal or diary or a way to express their feelings about the infection.

Encourage the child to use art or writing to express feelings. “If HIV had a face, what would it look like? Or start a discussion with, ‘If I had a million dollars, I would get rid of this virus. What would you do with a million dollars?’ Keep those discussions going,” Wiener suggested.

“It is usually not until days or weeks after disclosure that the child has the courage to ask more questions,” she added. However, after finally making the disclosure, some parents feel so relieved and so exhausted from the ordeal that they may not have the emotional energy to talk about it again. This blocks open communication at a time when sharing concerns about the disease and its impact on the family is most important.

If you see any such problems, talk to your child and if necessary, seek help from a social worker or psychotherapist. Remember, disclosure is not a one-time event and a child needs constant reassurance that they did not cause the disease.

Don’t forget siblings in the disclosure process.

Whether or not a sibling is told depends on age, said Wiener. “If the sibling is close in age, I don’t make it a choice, the sibling must be told. But, I do give them a choice of whether the infected child tells the sibling or if the parents tell the sibling. You need to give the child a sense of control. Living with secrets in the home does not promote a healthy emotional climate. I try to minimize the amount of secrets or lying that’s going on. However, if there’s a medical procedure or if they’re on interferon which makes them grouchy, it’s important that siblings know why.”

Even after disclosure is made, the full reality of the diagnosis may not come about for years. “It may not be until someone dies, or they get sick for the first time or they can’t go to a party and drink like everyone else that the reality really sinks in,” said Wiener. “At that point, it becomes an emotional reality, not just an intellectual reality.”

Wiener finds most parents do feel relief after making disclosure. The burden of secrecy is lifted, and children who already intuitively know something is wrong often feel better after they are told of their diagnosis. Siblings, especially if they are older, are also relieved when the veil of secrecy is lifted.

“The demands of keeping the family secret is a heavy burden for a young sibling and may threaten healthy development,” Wiener wrote in a study of siblings of HIV-infected children. “As inquisitive peers begin asking siblings why their brother or sister is sick, it becomes increasingly difficult not to tell the secret. One 9-year-old girl describes: ‘I want to tell people. Right when I almost say it, I remember in my head I’m not allowed to.’”

Resentment of the special treatment given to the sick sibling may cause the healthy sibling to feel less loved, Wiener explained, particularly if no explanation for the preferential treatment is provided.

Heidi Haiken, who has worked with more than 400 HIV-infected kids, has found disclosure to be beneficial to parents and kids alike. “By and large, the kids do well and are glad they’ve been told,” she said.

But disclosure is just a step in the journey. Parents must be prepared to ask, probe and continue the dialogue about health safety, standard precautions, medical treatments, good nutrition and the fundamentals of safer sex with their infected children.

“In our program, we start teaching safer sex at age 10 to 13,” said Haiken. “We give out condoms, talk about masturbation and how to keep yourself and your partner safe. We don’t deny they’re sexual beings, we focus on how to be safe with it, how drugs and alcohol can make you do things that aren’t safe.”

That safer sex discussion is just one more elaboration on the discussion that began when parents tell their infected toddlers never to touch anyone’s “boo-boos.”

Most parents of infected children and teens don’t have a Heidi Haiken or Lori Wiener in their hometowns. And, they can’t count on local schools to teach standard precautions or to delve into the nitty gritty of safer sex procedures. Most parents must be open and honest as they continue these discussions, no matter how painful or awkward, throughout their children’s lives.

When girls first start menstruating, one of the less-talked about side effects is the messiness. A practical mom of an HCV+ teenage girl contacted us to find out just how to deal with potential blood and body fluid exposures in the home and in public areas.

We thought the answers to her questions might serve many families, so we’re posting them here, with thanks to several infection preventionists who pitched in to provide answers!

In no particular order, here are the questions and answers.

Q: What cleaning products can we use to kill the hepatitis C virus?

Hepatitis C is not an easy bug to kill. Store-bought products (such as Lysol®, Clorox® Clean-up® Cleaner with Bleach, or Mr. Clean®) are not effective.

Bleach is questionable with regard to killing HCV. The proper dilution and the state of the HCV will vary the efficacy. If HCV is in a dried state, it is harder to kill than if it’s in a liquid state. With all blood or infected body fluids, the area needs to be physically cleaned first and then disinfected with 1:10 dilution of bleach (one part bleach, 10 parts water), although studies (see references below) are varied on efficacy.

Ethanol in studies does not show efficacy. Hand Hygiene Alcohol MSDS sheets do not list HCV as a bug that is killed by an alcohol hand rinse.

Super Sani-Cloth Wipes to be used on environment, a quaternary in a cloth/wipe form, kills HCV. Although I would like to emphasize that cleaning the environment must occur before any of these products are effective. Clorox® Germicidal Wipes, bleach wipes for the environment, kills HCV.

For any product, the label must be read. If the label states that it kills HCV, then follow the manufacturer’s guidelines with regard to kill time.

For skin that is contaminated with blood, the hands or skin can be cleaned with soap and water. Wet the skin, suds and use friction on the area with soap for 20 seconds or more, and thoroughly rinse the skin with warm water. This is not to kill the virus but an action to rinse the virus off the skin.

Answering these questions was a very useful refresher on bloodborne pathogens. Breaking the chain of infection is key in preventing transmission to others. Each link must be present and in sequential order for an infection to occur. The links are: infectious agent, reservoir, portal of exit from the reservoir, mode of transmission, and portal of entry into a susceptible host.

Q: How does one handle and dispose of soiled sanitary pads, underwear, or tampon applicators? What about the mess that soiled hands leave behind?

There are a variety of products on the market for the disposal of tampons and sanitary napkins (search the internet “products for tampon/sanitary napkin disposal”). The products may have some advantages over a plastic baggie that can be difficult to seal with potentially soiled hands in a restroom stall.

There are towelettes that can kill HCV, but they are not meant for cleaning of skin, just cleaning of surfaces (it takes 3-4 minutes for HCV to be killed on a surface with these products).

Towelettes for hand sanitizing can be used to clean hands prior to leaving the stall— they are available in small packets that can be kept in a purse. Hand washing with soap and water is important before leaving the bathroom, even if towelettes are used to wipe the visible blood off of your fingers, because the towelettes won’t kill HCV, they will just wipe off some of the blood.

When an HCV+ woman is having her menstrual period, she needs to be prepared to dispose of her sanitary napkin/tampon in a way that decreases exposure of her blood to the environment.

When entering a public restroom, she needs to practice procedure that flows from dirty to clean. This means that prior to entering the restroom stall, she needs to have the items to complete this process—napkin/tampon, disposal bag, disinfectant wipes, and hand cleaning wipes.

She should then get the items out of her purse if there is a place/shelf to put them. If there is not a place, then she should at least put them at the top of her purse, so she is not digging around for them when she needs to use them. Next step is to open the items she needs, such as disposal bag.

Remember, if she is in a public restroom with the designated metal disposal box with leak proof bag she does not have to put her napkin/tampon in a separate bag unless it is very soiled and leaky (that is to reduce contamination of the metal box as it is placed in it). The rationale for this is that the special metal containers are meant for everyone’s napkin/tampon, and all items should be treated as potentially infectious, not just one individual’s napkin/tampon.

The restroom cleaning person’s job description to empty and clean that container falls under the OSHA mandate to receive education and training for bloodborne pathogens. They should know how to properly handle this by using proper personal protective equipment.

While she is removing her napkin/tampon, it might be best to use her less dominant hand so she will have her dominant hand with better control to reach for the disposal bag on top of her purse.

If she has any soiled underwear, she should replace it at this time using a separate disposal bag since she will bring it home to wash. After removing and replacing the napkin/tampon, she needs to clean the environment of any visible blood with the disinfectant wipes. Put the used disinfectant wipes in either the special metal box, if available, or the disposal bag that contains her used napkin/tampon.

If she has visible blood on her hands, she should use the hand cleaning wipes. Also, put the used hand wipes in either the special metal box, if available, or the disposal bag that contains her used napkin/tampon.

Once she leaves the stall, she needs to do hand hygiene at the sink with soap and water. Research has shown that we need to pay attention to cleaning our thumbs, between fingers, around our wrist, and our dominant hand. Also, once she is finished with water, soap, and drying her hands, she should use a paper towel to turn off the faucet and to open the bathroom door, since so many people open the door without doing hand hygiene.

As for her soiled clothes, if she is away from home she should remove them and place them in a plastic bag with the intent of removing the items as soon as she gets home. If it will be awhile before she will return home, she might want to add some water to the bag to keep it moist.

Once she is home, she should place the soiled item in a designated bucket to soak. If someone else is handling her soiled clothes, they should wear gloves. Also, remember to not hold the soiled items next to your clothes. If there is excessive blood or blood clots, they should be mechanical removed either with gloved hands or brush. Next step is to spray some stain remover on the area. OxiClean® is one product that works on red stains. Remember to follow the manufacturer’s instructions. For OxiClean®, spray it on the stain until it’s saturated, rub in, and let stand for up to 10 minutes. Do not let OxiClean® dry on fabric.

(Another infection preventionist contributed quite a bit to this answer, but due to her workplace, she asked that we not share her name.)

Q: What precautions should be taken around the house?

Standard precautions (acting under the assumption that all blood and body fluids are potentially infectious) can and should be followed at home, especially for people living with HCV, in order to prevent the transmission of the virus to others.

Casual contact, such as sharing household items (dishes, cups, and glasses) is not a risk. But blood, body fluids, and items that come in contact with blood are possibly infectious.

Cleaning up blood spills and not sharing household grooming equipment (such as razors, nail clippers, and toothbrushes) will keep people and their families safe from HCV and other infections.

LAUNDRY:

Clothes may be washed together with regular detergents

Use gloves when handling any clothes stained with blood, semen, or vaginal fluids

Wash blood-stained items in hot soapy water using one cup of bleach per load

If items cannot go into the wash, wipe them dry and take them to the dry cleaners

Wash contaminated items with hot water and detergent for at least 25 minutes. Presoaking may be required for heavily soiled clothing. The most important factor in laundering clothing contaminated is elimination of potentially infectious agents by soap and hot water.

Per VA Department of Health

PRECAUTIONS FOR BLOOD SPILL CLEAN-UP

When cleaning up blood spills, the following steps are important for preventing the spread of bloodborne infections like HCV:

Wear gloves—torn gloves will not protect the hands from coming into contact with the blood.

Carefully remove any sharp pieces, such as broken glass, and put them in a sturdy plastic container like one used for detergents.

Wipe up the blood using paper towels or disposable rags and cloths.

Disinfect the area with a solution of at 1 part bleach to 9 parts water. [note the difference in solution compared to Cathy’s in the first Q/A – perhaps take your pick?]

Wipe up the bleach solution using paper towels or disposable rags and cloths.

Dispose of the gloves, paper towel, rags and cloths into a durable bag.

Blogging is therapeutic. For those living with or affected by infectious diseases, it can be a way to connect with those whose lives mirror their own.

Brooke Davidoff, diagnosed HIV positive in January 2010, blogs about her life as a newlywed and a first-time mom. Brooke’s life turned upside down during her pregnancy, when she had a routine blood test for HIV and discovered she was positive. “If there was no baby, I’d still have no idea,” she blogged.

Brooke started blogging “. . . to express myself, I don’t know how not to. When I was diagnosed, I searched for stuff written by other HIV positive females to relate to, and I had a very hard time finding what I was looking for. So I began to write it for other women like me who needed to know they are not alone.”

Sabina is a 15-year-old girl who loves volleyball and dancing. She’s slogging through a year of treatment for hepatitis C and blogs about it “. . . to share my experience of HCV treatment for children or adults who are starting or already started their treatment. I know that treatment can be difficult and painful, I would just like to give another perspective. I just want to help out and be there for other kids or adults.”

Elizabeth Boskey, PhD, MPH, calls on her education and research experience each time she blogs about STDs. Ever the teacher, Elizabeth says, “There is a lot of secrecy and stigma surrounding STDs. I blog about STDs not only to address the misconceptions about them, but to make them a topic of discussion.

“Some people think that having an STD means that they’re dirty or ruined, that infection marks them as a slut or somehow undesirable—all of which is ridiculous. Still, these feelings are common in people who have had bad experiences disclosing an STD to a partner, or who have simply internalized the stigma that is widely present in American society.

“People make jokes, and not kind ones, about STD infection, but the truth is that STDs are just diseases like any other. Yes, they are often preventable, and people should do their best to prevent them, but acquiring an STD doesn’t make you a bad person.”

Are you ready to blog?
It’s easy to get started. There’s no cost, other than your time, and, if you’re speaking from personal experience, what it costs you to speak from your heart.

Brooke blogs to share with women like herself, and to let her friends and family know that she’s OK. “I think I’m helping other people feel more normal…the stigma hopefully will diminish in time.”

Blogging can be a positive experience, but there are emotional risks.

“I think that if more people blogged about STDs it might help reduce some of the stigma associated with them,” says Elizabeth. “However, I think it’s important to acknowledge that doing so is not without risks. Publicly acknowledging an STD infection may change the way that people around you treat you. It may even affect your employment—although it shouldn’t.”

Boundaries
It’s OK to not share every single thing in your life. Write honestly, but don’t fret about keeping some details private. It is your life, so you define the boundaries beyond which you’re not comfortable sharing.

Readers
If you write about it, they will come, but be prepared for the readers’ thoughts that may cascade upon you. Some comments you’ll treasure and some, well, let’s just say they’ll raise the eyebrows.

“I check daily for new comments and emails,” says Brooke. “The ones that touch me the most are people who found out the same way I did, or the ones who decided to have a baby after reading my story.”

There’s a yin yang to blogging, as there is elsewhere in life. Be prepared for the nasties you’ll find in the comments section of your blog.

“Although blogging can be a wonderful way to gather personal support, it may also have less positive results,” explains Elizabeth. “Comments can be negative, or even cruel and vindictive. It may be worth blogging anonymously if you are concerned about your privacy and the ramifications for exposure in your daily life; however, it is very difficult to ‘guarantee’ that your identity will not become known. This is particularly true if you are discussing sensitive issues such as those involving your sexuality.”

Last words
Bloggers always get the last word, and that’s no less true for our guests today.

Brooke on HIV: I live a normal life other than taking pills every day. I’m waiting to see what the disease does to me. I think all of us sit and wonder when it’s going to kick in, and what it’s going to do.
If you’re having unprotected sex, get tested. You never know. There are really no symptoms that would lead you to get the test, it’s better to know and get on meds now than find out when it’s too late and you’re really sick.

Sabina on HCV: [I want people to know] that we’re not harmful to others as long as we don’t share blood transferring items, such as razors, and toothbrushes. And that having HCV [hepatitis C virus] doesn’t set you apart from others even though it’s a serious virus.

Elizabeth on STDs: I don’t think you have to blog about STDs to help destigmatize them. Make a point of having open and honest discussions of sexuality with your partners and your family. Don’t allow people to get away with making cruel comments about infectious diseases or even “cute” jokes. And, finally, remember that a lot of the stigma surrounding STDs has to do with ignorance. Educate yourself—about how common STDs are, about testing, and about prevention—so that you can educate the people around you.

As a little girl, I dreamed of being a wife and mother with a home filled with children.

When I realized that “prince charming” wasn’t showing, I knew I could still be a mom. When I set out on the journey alone, I thought it would take forever, however I was a lucky one. I signed with an adoption agency in June of 2002, and my son was born in August 2002.

When the agency told me they had a birthmother looking for a single mom, I questioned why? In speaking to the birthmom she said “she had grown up in a household where her parents fought a lot, so her thought was if there was one parent she was ok with that.” Anyway, it worked out great for me.

The agency told me the mother was a drug user and had hepatitis B and C. I thought “OK so what does that mean?”

I was able to get the birthmom’s medical records as well as my son’s records, once he was born, and have then reviewed. At birth, my son’s blood was non-reactive to hepatitis C and of course he was given the vaccine for hepatitis B. OK, non-reactive that’s good right? Well it really doesn’t mean anything except that the virus is not active as of right now, and we would have to wait until he was 15 months old to run further blood work.

When I was asked if I still wanted to adopt him, I thought they were crazy, well of course. He was my son, it was meant for me to be his mom and my blessing from above. We plugged along with him over the first year having some issues, having to be withdrawn from the drugs he was born addicted to, having a bout of meningitis, bladder infections, a lot of virus issues etc. Then the dreaded 15 month time frame was here.

Ok we went and had the blood work and I just knew in my heart that since I had been told that there was less than a 1% chance that he would have hepatitis C that we would be doing this just to get the all clear. I remember it was right before Thanksgiving and I was going into the mall to shop when my cell phone rang. It was Ryan’s pediatrician who was a friend that I had worked with over the years. I couldn’t believe what I was hearing, his blood work was positive for hepatitis C. What, say that again? You have to be wrong, right?

No, he wasn’t wrong. He told me to enjoy the holiday and he would see me right after. Enjoy the holiday, are you kidding me, how would I ever enjoy anything again?

You see for me the first 15 months of my son’s life was spent dealing with the other issues, and not ever really thinking that we would have to deal with HCV. I didn’t really know a lot about it and my first thought was “Oh my God, I am going to have to watch my child suffer.”

Well over the next week I began researching and reading everything I could on hepatitis. By the time Ryan got in to see the GI specialist, I knew we had to run a genotype screening and viral load blood work. I was in an attack mode and wanted my baby fixed. Well I wish it was that easy. The GI physician here at our local Childrens’ Hospital told me that there was not much info on children dealing with this disease and he would follow Ryan with blood work and ultrasounds every six months, and at age 3 we would treat him.

WHAT, I wanted something done now. Of course I realized in my mind that that was not the protocol and that I had to trust the doctors. That was hard for me, I wanted to be in control over what happened with my son, not this horrible disease that could be eating away at his liver. How would I allow it to go on for another 2 years before we did anything? Of course, now I realize the harshness of the treatment, but at that time I just wanted it not to be true. I prayed that I would be strong for my son and be able to gain as much knowledge as I could about this monster living within his blood and liver.

(Guest post in a series from Sabina, our 15-year-old friend living with hepatitis C.)

Dear Readers,

Yesterday, I had my fourth interferon shot! And I didn’t feel any pain.

Yes, I was anxious but when I actually got the shot it was easy. So far, I’m lucky that I have not had any symptoms after the shot.

Sometimes I get headaches, nausea, and tired from the ribavirin pills. But I still feel upbeat and I’m really glad that so far I can do the sports I love to do.

Courtesy: Meredith James Johnstone

Last Tuesday, I started dance classes for the first time and I’m having great loads of fun. This Friday I have tryouts for volleyball. I’m excited for that. I don’t know if I can keep up both sports but I’m going to try.

Beyond sports, I feel like I’ve been able to do most activities and work at school. I haven’t missed any time, although I’ve been pretty tired. I’ve been going to bed early, like around 8 instead of 11. That’s a big difference but I’m tired and I get to the point where I can’t keep my eyes open any more. This makes it harder to get my homework finished, but if I work on managing my time I can get everything done.

My parents say that if I get too tired I will have to let some activities go. I realize I shouldn’t overwork myself. But it feels good to be active and to have goals set for myself.

One question I have for my readers is this—are there any other kids out there who are like me and going through this or thinking about getting treated? What are your views? What are the obstacles you are running into? And are you having any serious symptoms? I would love to hear from other people.

Disclaimer

The information on PKIDs' Blog is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for you or your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.